Friday, August 31, 2018

My Experiences Aboard the Ruby Princess and in Alaska!

Dear Readers,

First off, let me begin this post by saying how happy I am to be back on dry land. No matter how much fun I had with my extended family and parents celebrating their 50th anniversary nothing compares to the feeling of being back at home knowing that your wheelchair arrived in one piece. Those that have traveled on airplanes will no what I'm saying - especially once I show pictures of how my wheelchair arrived in Seattle. But let me start from the beginning.

After months of planning my mother had finally settled on taking the seven of us (brother and sister-in-law family included) to Alaska for their 50th anniversary. Congratulations again to mom and dad. I can only hope to have the kind of relationship you guys have - one of faith and commitment - that has lasted this long. In the beginning, we debated on taking my new wheelchair, concerned that it would get damaged in transport. You see I've traveled by plane several times before and have seen how they tried to carry my other wheelchair to the conveyor belt. Yes, they've actually done that. So you can imagine our concern about damaging the head control. But still, I was determined to be somewhat independent during this trip. So my dad took every precaution- learning how to dismantle the head control and joystick before handing it over to the airlines to board. He even attached a box with the parts on the wheelchair so they wouldn't get lost in transport on our way to Seattle. Despite our preparations, this is how the wheelchair arrived.

Don't get me wrong, everything turned out wonderful and we were able to fix it when we arrived in Seattle where we were to board the next day; I'm just letting giving people a realistic view of what can and often does happen to wheelchairs at the airport. The airline we used were very patient and apologetic as they stood watching my brother and dad put it back together again. It's just that people using wheelchairs should be ready for anything after traveling by airplane. Once we collected our luggage from baggage claim, we were about to head to the hotel for the night when we were met by a Princess representative. We explained we were supposed to get a transport from the airport to the dock to go aboard ship tomorrow; she took our information and made the transportation even easier for us arranging transportation from the airport to our hotel that day as well as arranging transport from the hotel to the dock the very next day- eliminating one less trip for our numerous bags.

Onboard, mom had reserved two suites for us - one accessible one for us and one regular for my brother and sister-in-law as well as my nieces. They both were pretty much identical except for the amount of closet space (I assume the lack of closet room in the other suite was used to accommodate and make extra room in our suite. Sorry guys!) and the accessible bathroom  Otherwise, we both had a balcony. I was surprised by this because I would've thought they would be afraid of possible accidents. But no, there was a little ramp inside the door that came out every time the balcony door was open. Granted I made sure that my parents watched me every time I went over it just in case  (see the pictures below)

Although the suites were accessible, I still had a lot of difficulties getting around the ship. This is for two major reasons.
  1. The hallways
  2. The elevators

In most cases, the hallways are narrow to the suites not leaving much space for a wheelchair let alone other people to walk by. In terms of the elevators, I have two complaints. First, it is difficult to get on one.  Now I realize that this is probably because Princess cruises are larger and have room for more passengers, but that still doesn't account for the quickly closing doors. After all, elevators are primarily for those who are unable to walk up and down stairs. Right? I was fortunate to have someone with me at all times to make sure my chair did not get caught in the doors. But there were some very close calls at times.

Despite the difficulties, I had a marvelous time going around the ship and out to the ports. The first evening everyone and I went to go see a musical production called "Magic To Do" in the Princess Theater. Exclusively for Princess cruises, this musical featured a compilation of songs from Stephen Schwartz. Some of these included Pippin, Godspell and many more. We also made quick friends with Ashley, Monica, George, and Joe. Their family and ours developed a deep connection when they realized I also had CP like their daughter, Ashley.  (If that weren't enough for coincidences, they too had purchased a wheelchair controlled by a head- array.) Since Ashley is only 15, they were happy to see the possibilities ahead for their daughter...

On our first day at sea, the family met for breakfast as my nieces geared up for their time in their age-appropriate activities. Since they weren't allowed around the ship on their own, Elizabeth and Rebecca and I ventured out to get ice cream on our own several times. This was really exciting for me since it allowed me to practice my driving and see how helpful my nieces might be in the future. Elizabeth and Rebekah are really growing up right before my eyes.

On our first port of call (Juneau, Alaska) we disembarked with hopes of taking the tramway overlooking the mountains. But that was not meant to be as passengers who booked the excursion were stuck on the mountain do to the tram not working and they were unable to find a way down until hours later.. Fortunately, Monica and Joe were able to enjoy the view before it broke down; unfortunately,, though, we had to stand in line and wait for a refund. Even so, we made the best out of a situation by meeting and talking to a real Alaskan born Indian from a tribe (I believe it was he was one of the only Alaskan Cliniko Indians in Alaska). I also got my very first Alaskan souvenir from the trip.

On Tuesday we arrived in Skagway Alaska (our second port of call), where we prepared to board the   White Pass and Yukon Railway. This is a four- hour train ride into the mountains via the White Pass. While Ashley and I enjoyed the view from the car, our parents were free to watch from the open platform between the two cars. Locally, I was able to raise myself up to look out through the windows and see more of the views. At the top of the mountains, we briefly passed through Canada (we didn't need our passports though) and later always down. See some of the pictures below.

Wednesday was relaxing day on board as we moved through Glacier Bay National Park. Park Rangers climbed aboard in the early morning hours to answer any questions the passengers may have had; I even got my picture taken with one of them. Below is a picture of my family and I took at the Margerie Glacier.

We embarked on our third port of call on Thursday in Ketchikan Alaska. While my nieces were interested in seeing if there were any seals in the river, I found myself occupied shopping. It was in Ketchikan where I found my final souvenir for Alaska a purple necklace which I paid for myself. When we boarded the Ruby Princess cruise ship once more, we found a surprise at our door- an exclusive invitation for all seven of us to dine at the Share restaurant- an exclusive restaurant of six-course creations by a famous cook.

Friday was my parents 50th anniversary as well as our final day at sea. We spent the morning drinking coffee on our balcony while trying to see if we could spot any whales at the same time. Our friend, Monica brought over some wine she brought from California to celebrate and we had a girls time. For once, I actually enjoyed the sweet wine (which I later found out was Stella Rose.).

 Since my brother and sister-in-law were out on excursions with Elizabeth and Rebekah, we celebrated my parent's anniversary just the three of us in our usual dining room. It was neat because the waiters actually sang happy anniversary (song sang to the tune of "Happy Birthday") and videotaped the whole thing. Later we disembarked with Ashley's family and explored Victoria, British Columbia, Canada together. All in all, it was an amazing cruise with wonderful weather and amazing memories--full of amazing memories and brand-new friendships. Someone told us that this was the best weather they've had out of the 21 cruises. Most of the passengers were unable to view the glaciers because of the fog or rainy weather, but we had a wonderful clear view. 

Monday, August 27, 2018

Raising Tourette's Premieres Aug 15th 10pm ET on A&E

Welcome Back Readers

After seven days on the Princess cruise to Alaska, I am happy to report I am back on dry land and that my wheelchair is still in one piece. Although it was close call when we arrived in Seattle for the first time. But I will leave that for my Alaska cruise post which will be in a few days once I am fully back to normal. For now, I want to introduce you to a new show that premiered on A&E; this show shines a new light on the neurologic disorder called Tourette's. It follows several parents and their children of numerous ages who are dealing with Tourette's. It airs on Wednesdays at 10 and 10:30 PM.

Monday, August 13, 2018

ZION Official Trailer (2018) | Netflix | Documentary

Welcome Back Readers~

Before I take a break from YouTube and this blog for a couple of days, I was wondering what to write about; but then I just happened to see a short commercial on Netflix about Zion Clark's story. Put up for adoption by his mother, Zion was born with no legs. After putting up with negative experiences in a number of foster homes, he had just about given up hope about ever being adopted; at 16, though, his dream finally came through. Despite this, he still had difficulty trying to fit in. Zion never really felt comfortable wearing`prosthetic legs but felt more himself when he was closer to the ground. That's when the idea of wrestling came into play. Zion refuses to see himself as a person with a disability; instead, he chooses to rely on God and trust in his plan for his life. For more information on this movie, please see the following:

Wednesday, August 8, 2018

Encouragement:38 years in Bethesda

Thirty-Eight Years at Bethesda
Guest Thoughts by Debbie’s Dad

One of several interesting accounts about disabled people meeting Jesus occurs in John’s Gospel during Jesus’ second visit to Jerusalem. The account describes His encounter with a disabled man at the pool called Bethesda. It was common in those days to have pools for healing and purification. At this pool there was apparently a tradition that when the waters in the pool moved, there was a race to get in the pool – the first was healed. (This healing competition is certainly not consistent with a Hebrew or Christian view of compassion for the disabled - a race, a race of the disabled for healing? Pretty ironic, right? The ancient world had many deities and must have also had many such traditions!) Of course, the pool area was filled with “a great multitude of sick people, blind, lame, paralyzed” waiting for this event (John 5:3).  John describes the encounter like this:
5 Now a certain man was there who had an infirmity thirty-eight years. 6 When Jesus saw him lying there and knew that he already had been in that condition a long time, He said to him, "Do you want to be made well?" 7 The sick man answered Him, "Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me." (John 5: 5-7 NKJV)
As the father of a disabled daughter, this brief account raises several questions in my mind:

What kind of infirmity did he have?  John notes that at the Bethesda pools there were “a great multitude of sick people, blind, lame, paralyzed”.  The original words used to represent lame and paralyzed refer to those who are physically weakened, limping, and whose body is withered. The man that Jesus met is described by a different word that more generally refers to his weakness or infirmity that he had for 38 years – likely run the business and would like to talk his whole life.  Because of this, it is reasonable to think that this man might have had cerebral palsy and, like Debbie, suffered brain damage at birth that impaired his muscle tone and motor activity. And like Debbie, he may have been quadriplegic, because he was “lying there” and unable to get into the pool.  In any event, someone caring person brought him to the pool of Bethesda that day, where he was reclining. 

Who cared for him? At the time of Christ, it is believed that a normal lifespan was about half of today’s 80 years. If this is so, the man’s parents would have likely died over a decade or two before this point.  Relatives – siblings, nephews, cousins, or neighbors were probably caring for him and in those days this was not easy. We also know that Jesus encountered another man who was cared for by some men who lowered him through a roof to be able to meet Jesus. (Luke 5:17-20) In that case, Luke specifically used a word that is often translated as or “sick with palsy” a condition of weakness with inability to control aspects of your body; that man could also have his friend is a missing had cerebral palsy.  In that time, caregivers had a difficult time - and Jesus specifically commended those who cared for the weak (the same word used for the man at Bethesda) as if they care for Him! (Matt. 25:36)

Why Did Jesus ask him if he wanted to get well? Jesus “knew that he had been there a long time” and yet asked the man if he wanted to be whole. A good friend of Debbie’s once told me she asked Debbie the same question – and Debbie hesitated. She has been quadriplegic her whole life and this is how she perceives herself; she could not imagine being whole. I believe it was an act of kindness that Jesus asked what might seem like an obvious question. Did the man want this radical change after 38 years? I believe you know the rest of the account; Jesus instructed the man to get up, pick up his mat and walk. And he did, in an illustration of Jesus’ power over nature, clear evidence of his claim to be the anticipated king of the Jews, and an example of grace to a man who had given no indication of any faith in Jesus (See John 5:11-13).

Why 38 Years of waiting?  The man indicated that he never made it into the pool because he had no one to put him in the pool. He had effectively been waiting a long time to be made whole! It is a long time. I know. The reason this passage has particular meaning to me because this year is because Debbie has now been a quadriplegic for 38 years, too. And she is trusting in the very same Lord Jesus that met the man at Bethesda. Near the end of His ministry and prior to his crucifixion, Jesus simply said, "Let not your heart be troubled; you believe in God, believe also in Me …”(John 14:1)  I am proud of my daughter who heart is not troubled – because she believes in Him.

Debbie’s Take: First off, let me say I never really realized this miracle happened to someone my age or disability. In reading my dad’s description, I have gotten a new understanding of the miracle of the 38-year-old man. To be honest, I don’t remember when my good friend asked me if I ever wanted healing or what my first reaction was. I can only surmise that I was taking a back because I’ve never really thought of it. That isn’t to say that I don’t believe God can do it these days. I KNOW HE CAN. Miracles happen every day. We just need to be open enough to see them.

Growing up, strangers have tried their best to “heal” me of my CP. I don’t doubt their sincerity in trying to pray for me and help me. However, coming away from those experiences I couldn’t but be disappointed and upset. After all, some people tend to equate faith with one’s ability to be healed. Did I not measure up?? Was there something wrong with me??  Coming away from those experiences, I was often disappointed or upset. After 38 years, I have come to a different conclusion- that I'm disabled like this for a reason. I would like to believe dad’s reason for Jesus asking the man with the disability whether he’d like to be healed is correct. Jesus not only wants to make sure the man believes, but Jesus realizes he’s spent 38 years and has become comfortable with his situation.

As dad mentioned earlier, a friend told him I once hesitated on the topic of being healed. As I have explained above, this question has often brought feelings of doubt and not measuring up to the surface. But even more than that, I don’t know who I’d be if I weren’t in this wheelchair. One characteristic can change your whole perspective or outlook on life and I don’t really know myself any other way.

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